Three years ago, one of my patients asked, “Doc, why can’t we talk on the computer?”

The question caught me off guard. In 17 years as a doctor for low-income Medicaid and uninsured people, it was the first time a patient expressed interest in swapping in-person visits with technology. He had moved 40 miles away from the clinic but didn’t want to change providers.

When I told him a FaceTime or Skype visit was not feasible, he then asked if we could talk on the phone or text because he wasn’t working, and this would allow him to spend less on gas. Although intrigued, my inability to meet his needs made me feel inadequate. I wondered how many other people like him wished the same but had never mentioned it.

After that visit, both in the office and on the street I found nearly unanimous agreement about people’s desire to communicate with health care providers using cell phones and the Internet. The few who preferred clinic-based visits, perhaps coincidentally, were either elderly or lived alone and felt socially isolated.

I shared this experience with a few health policy and opinion leaders. Could we transition to health IT solutions for follow up visits and perhaps even to keep people out of the ER? The consensus response was, “Do the poor have access to technology and the internet?”

These responses are not dissimilar from those I received in 2005 when I proposed conducting a computer-basedresearch study for the CDC among prisoners. Seasoned researchers were skeptical and asked, “Are prisoners able to use computers?” “Aren’t you worried about literacy?” The computerized survey was welcomed by the participants and we encountered few, if any challenges with literacy. The skepticism, even now, represents a persistent knowledge gap between decision makers — funders, scientists, researchers, policymakers — and the community.

Research data show nearly 80 percent of persons from low income households use cell phones to text and this number increases annually. The data are also consistent with my experience. Nearly all of my patients have phones and in recent years we have used this strategy to locate and stay connected with many of them.

Whether on the bus, subway, grocery store line or walking down the street, it seems everyone is texting, staring at or talking into a device, even in our poorest neighborhoods. Yet, IT-based health care strategies are exploding everywhere except in low-income communities where, ironically, much of our highest cost health care is centralized. When will we make it a priority? I am convinced the community is ready — even if we aren’t.

Over the last 24 hours many have expressed jubilation over the Republicans’ failure to pass the American Health Care Act. As a physician and health advocate, I see little reason to rejoice because the dissent marshaling the failure was primarily from those who wished to gut the bill even further. This means the next iteration — and I am sure there will be a next — is likely to be even more restrictive. Most people don’t appreciate the value of the Affordable Care Act (ACA) because we don’t hear about its full impact in the media. Instead we only hear about skyrocketing premiums and Medicaid ‘hand outs’ for the poor. Did you know Medicaid pays for nursing home stays, care for the disabled and working families with children who can’t afford to buy from private insurers like Humana and Aetna? Did you know Medicaid also covers health care costs for many our nation’s children? We must protect these assurances of health care. However, I see a few major challenges in doing so:

The messages controlling the narrative, i.e. “It’s a disaster”, “bad health care”, etc. are severely imbalanced. In addition to not only being about the poor, the ACA is not the culprit for delivery of so-called ‘bad health care’. This characterization is about the high cost of premiums for an unknown number of people. I’ve had many patients insured for the first time through the ACA and I take issue with anyone believing we delivered bad care. Citizens who’ve benefitted from the ACA must speak out to help balance these messages.

2. Insurers are responsible for unfairly raising premiums to stabilize profits and no one, including the public, is calling them out on it. Insurance companies are a powerful lobby so why would Congress regulate them more to protect Americans from unfair premium hikes?

3. Numerous people have told me, ‘I don’t want government mandating what I can and can’t do.’ This is interesting to me. Do you pay taxes? That’s only one example. What about home owner’s or car insurance? You can’t buy a house without mandated insurance. What happens if you’re caught driving a car without insurance?

Our problems are often rooted in our inability to compromise and look out for each other. This is no different. Ultimately we have to hold Congress accountable for representing us. If the narrative you’re hearing about the ACA doesn’t represent you- that’s a problem. If the narrative you’re hearing about the ACA ONLY represents you- that’s a problem.

A few weeks ago I entered an elevator with my bike helmet. A gentleman noticed the helmet and commented, “That is great you ride a bike. I wish I could get my wife and daughters to exercise. I want them to learn to swim but they don’t want to mess up their hair.” I asked him what he thought the solution might be. He replied sarcastically, “I don’t know. Water that’s not wet?” He chuckled as he exited the elevator, but the conversation lingered, and I thought, “The beauty industry is fueling the obesity epidemic in black women.”

Black women have the highest rates of obesity in the U.S., and four of the five leading causes of death in black women are linked to obesity. Yet, for many of us, it seems our hair is more cherished than our health. The history and emotionally complex relationship between black women and hair has been highlighted in a controversial film that set social media ablaze with kudos and criticism alike. However, as a medical doctor who for over 20 years has witnessed the health impact of inactivity, our behavior is of great concern to me and continues to weigh heavily on my heart.

SOPHISTICATE BLACK HAIR MAGAZINE, 2011

Images of black women’s hair

A few years ago when we opened the Community Wellness Collective (CWC) in the most underserved, under-resourced residential area in Washington, D.C., we struggled to fill our exercise classes. We established the CWC because over the years, my patients with chronic health conditions told me they wanted to exercise but either had no where to go nearby, could not afford it or needed assistance to get started. Our wellness instructors, on a mission to serve and volunteer their time, would often traipse across the Anacostia River to an empty room. Consequently, I began to casually inquire about reasons for the lack of participation at CWC despite its location in a community with some of the nation’s most glaring health disparities. I learned a lot, but the most disconcerting reason was related to hair. I was told of associations between self-confidence and self-image and hairstyle and how class times needed to coincide with calendar appointments with the hairdresser. If a person had an appointment on Saturday morning, the best time for a class would be on a Friday night when she had no plans to go out that evening. A few women expressed their desire to exercise consistently but were conflicted by the financial burden associated with frequent beauty shop appointments. I was told, “It costs too much.“

Indeed, it costs too much. The long-term impact of prioritizing hair over health will likely bear substantially greater costs associated with preventable diseases, long-term physical disability and quality of life. At a time when obesity rates in the nation, and strikingly among black women, are stubbornly high, it breaks my heart to be reminded the extent to which beauty and hair obsession are so engrained in our psyche and linked to self-worth they continue to drive our choices about health and wellness behaviors. We have the tools and information to combat obesity and other preventable diseases. But amidst the ubiquity, power and influence of the beauty industry, I wonder if we stand a chance. Do we? Let me hear from you.

While scrolling news headlines, a ticker for a recent Washington Post blog by Philips: ‘The Changing face of healthcare’, caught my attention. As expected the article included discussions about our national shifts toward value-based health care and why doctors and our health care system must transition toward becoming more responsive and data-driven. As with many articles on this topic, it was devoid of the patient perspective — health care consumers. The direct patient perspective is chronically absent from deliberations about our health care system transformation and I believe this continued omission will ultimately thwart efforts to improve quality and reduce costs. Patient engagement is central to any strategy to transform our health care system. Why then don’t we consistently seek and incorporate direct patient ― particularly high-cost users’ ― input about realistic approaches to health care innovation and transformation? What we would we learn if we did? I decided to chat about this with a few health care consumers.

During a health education session with low-income residents in Washington, DC, I posed a question to a room filled with middle-aged men and women, most of whom we would deem high-cost, high need users: ‘What would it take to convince you to stop using the emergency room and build a relationship with a primary care doctor?’. I learned three things. First, each of them had at least one negative interaction with the health care system which discouraged them from further engagement. They described dismissive doctors who make them feel as if they are on an assembly line and condescending and impatient health care staff who don’t actively listen to their concerns. Their comments applied to both inpatient and outpatient care. One person said, “Every person I know who went into the hospital sick, ended up dead. That’s why people don’t go”. These interactions and perceptions have eroded their confidence in our health care system as a place of compassion and healing. Consequently, for most of them, absent a dire situation, doctors and the health care system should be avoided.

Second, while they seemed aware of the relationship between preventive behaviors and good health, there was little personal acceptance of this connection when it came to theiractions and preventing disease. For example, they shared stories of people they knew who delayed care for diabetes resulting in leg amputation yet none of them had recently been screened for diabetes nor had they consistently gone for annual physical or dental exams.

Finally, they told me in quite colorful language about their deep and penetrating distrust of the medical establishment. The discussion focused primarily on the relationship between doctors and the pharmaceutical industry. One person said, “It [doesn’t] matter why you go to see the doctor, you’re [going to] walk out with a handful of pills and the medicine makes you even sicker than you were before.” Another said, “the only reason doctors want to see patients is to get rich prescribing drugs people don’t need.” I was a bit astounded by the uniformity of their opinion that doctors are more concerned about pleasing and being compensated by the pharmaceutical industry than caring for them. Health care-related conspiracy theories and distrust are more pervasive than we acknowledge and are impacting patients’ willingness to engage in our health care system.

I have participated in countless public health and health policy conversations. The focus of these health care strategy and program implementation discussions have never been focusedprimarilyon the types of issues raised by these consumers. Whether clinicians, policymakers, innovators, researchers or financial overseers, patients are our raison d’etre and their buy-in is imperative. Therefore, continued omission of their voices will thwart our progress. Addressing their feedback is daunting but we should not dismiss their concerns and suggestions because the solutions seem impractical. Until we strengthen our collaboration with health care consumers, directly acknowledge and consistently incorporate their perspectives into our strategies from conception to implementation, the transformation we seek will continue to elude us for decades on end.

In 2009, while I was on the medical faculty at Howard University, a 61-year-old, diabetic woman was referred to me by her primary care doctor. She was baffled about why she needed to see an infectious diseases doctor. During her hospital stay for intractable diabetes, per CDC recommendations she was screened for HIV but her doctor did not inform her about her new diagnosis. As frustrating for me as this was, I was thrilled she was referred for care and applauded the doctor for testing a 61-year-old woman for HIV. However, by the time I met her, HIV had severely damaged her immune system. She had AIDS. Had she been tested years earlier, this damage could have been avoided by early administration of medication.

Expectedly, once she began medication, HIV became the least of her worries. She began to feel better and consequently over the last four years has gained nearly 100 pounds. Because the HIV infection is completely controlled — her virus is undetectable — every visit we spend less than five percent of the visit time discussing her HIV status. The remaining 95 percent of the time is spent addressing one or more of the following issues: nutrition, strategies to increase physical activity, medication adherence and disclosure of HIV status. She isn’t unique. My recent visit with her is a poignant illustration of why HIV prevention, care and treatment should be integrated into the traditional model of chronic diseases’ prevention and management. Shifting our view of HIV to one of a chronic disease will reduce ongoing disease transmission because its integration into a holistic approach to health promotion and healthcare will reduce the stigma associated with the infection.

Any HIV provider across the country will agree the vast majority of HIV-positive persons on treatment are not medically suffering from HIV. Instead many suffer from the same environmental challenges as the rest of our society. They are often diabetic, hypertensive, sedentary and overweight. This reality has forced the emergence of patient-centered medical homes for HIV-positive people.

It is a model of care that is effective and expected to expand under implementation of the Affordable Care Act. At our clinic in southeast D.C., we have integrated a patient navigator into our clinical team. The navigator’s role is to serve as an educator, confidante and facilitator of entry into care to ensure a newly diagnosed person is linked to our services within 24 hours. Oftentimes, this clinical linkage happens in minutes because the healthcare navigator is available to immediately walk to the person’s location and begin a discussion about their healthcare. We implemented this process because the embarrassingly high rates of patients lost to health care required urgent attention. I suspect a review of primary care engagement for other chronic diseases like diabetes, cancer and heart disease would show similar concerns. Thus this model we have adopted for HIV care and treatment deserves consideration for all chronic diseases, not only HIV because it will reduce costly and inappropriate emergency department utilization and will foster sustainable relationships between patients and healthcare providers. Our clinical quality review demonstrated the value of the immediate linkage by a navigator because the interaction leads to better long-term health outcomes and consistent engagement in healthcare. Integrating HIV disease management into our conversations about and strategies for addressing chronic diseases would be a public health game changer — not only medically, but socially. In fact, doing so would assist in answering the White House’s call for strategies to reduce healthcare disparities.

HIV lingers because there aren’t enough people thinking and talking about it in medical institutions and in the community. And when we do, it is in isolation — within the HIV silo. This lack of attention and silence exacerbates stigma and shame associated with the diagnosis, which in turn discourages disclosure of HIV serostatus. Above all it discourages testing among patients and sadly, healthcare providers.

Consider the actions of the healthcare provider described above. The patient had been in care for diabetes for over 10 years, yet HIV was only considered when she was admitted at a medical facility with a routine HIV screening policy. Had this provider ever discussed her sexual history? If not, why not? Why didn’t the provider discuss the diagnosis? More importantly was the provider aware of the treatment advances for HIV infection and that the majority of new HIV cases can now be effectively managed by a trained primary care provider? Addressing the HIV epidemic will require much more than promulgation and perpetuation of recycled messages, program strategies and silos. As the CDC has been reporting for nearly two decades, we have yet to move the needle on the rate of new infections. We can. And I believe the answer is chronic diseases integration.

AIDS is not a death sentence! Many people still think AIDS means death but it’s not true. Thirty years ago it mattered if a person had AIDS because death was almost certain. Today it doesn’t. Advancements in HIV treatment can eliminate the threat of dying from AIDS but the community psyche is trapped in the past. In 2013 no one has to develop or die of AIDS. Why aren’t we getting this message?

We recently commemorated the 13th annual National Black AIDS Awareness Day (NBAAD). The goal of NBAAD is to raise awareness about HIV in the black community. My singular educational message for black America this NBAAD is that AIDS is not a death sentence! If I could, I would shout this message with a bullhorn from rooftops across the country.

AIDS can be prevented by early HIV testing and treatment. More importantly people diagnosed with AIDS can live a long life if they obtain treatment for HIV. Nowadays people with HIV and AIDS who are on treatment are not dying AIDS, they are dying from other ailments not related to AIDS. An added bonus is that being treated for HIV and AIDS reduces the likelihood of transmitting HIV to someone else.

There is reluctance by many in the black community to accept the truth about advancements in HIV treatment. This frustrates me. The lack of awareness and acceptance in our community hits me in the face in my clinic every week. Last week I saw two patients each illustrating our challenges with awareness and acceptance that AIDS is now a treatable condition.

The first is a man who was diagnosed with HIV in an emergency room five years ago. He presented to my clinic last week because he had developed a rash. When I asked why he decided not to follow up five years ago for treatment he said he was afraid he had AIDS and he knew he was going to die in a few years because there was no treatment for AIDS. He only came to see me to treat the rash because it was noticeable and people had begun to ask him about it. He had no idea HIV treatment was just as effective in people with AIDS.

The second person is an HIV-positive woman known to me because I started her on treatment one year ago. Despite numerous phone calls and notes of concerns sent to her she had not come for care since I wrote her initial prescription. When she arrived last week she nearly too weak to stand. When I asked why she hadn’t returned in a year, she told me she didn’t see the point in taking her medications since she had AIDS. Although I was confident we had covered this information, I again explained why AIDS is no longer a death sentence. She had become ill enough to be admitted to the hospital and this was completely avoidable. She, like so many patients I encounter, can’t fathom the effectiveness of new HIV medications. The community continues to make a distinction between HIV and AIDS. But as a clinician, I don’t. Actually, no one should. Because recent advancements in HIV treatment have rendered the terms AIDS so archaic it serves little purpose in 2013. It doesn’t matter if a person has AIDS!

The term AIDS was coined at a time when we had little information about HIV and worse, when stigma and discrimination were ubiquitous and unavoidable. But now I am convinced it is merely a barrier to our efforts to end this epidemic. Use of the term AIDS should be minimized in our conversations and eventually eliminated because as in the preceding examples, the perceptions shrouding the term “AIDS” discourage testing and engagement in care and treatment. At times I feel like a broken record when educating the community about the availability of new, effective treatment for HIV and AIDS. No one likes a broken record. But if that’s what it takes to make our society understand AIDS is no longer a death sentence, then I will continue to say it any way and anywhere I can. It doesn’t matter if a person has AIDS! It’s treatable and preventable! Get tested! Get treated! Live long!

Please will you help spread the word?

Tell me what you think it will it take to get people to accept and act on this message?

Our mental illness epidemic has weighed heavily on my heart for years but I have never taken the time to write about it until I saw an Associated Press article about military suicides. I am profoundly saddened by the revelation that so many of our honorable servicemen and women who help sustain the niceties I take for granted would take their own lives in response to the tragedy and pain they endure in silence. This is a national calamity, and it appears we have failed them in some way. Were adequate and appropriate mental health resources available to them, and if so, did they ever feel the social freedom to avail themselves of these resources? Has our society established a standard whereby it is dishonorable and “weak” to seek support for mental strain? Have we been complicit in a tacit conspiracy to shroud their suffering in secrecy? There really is no debate because I know we are guilty of all. In the United States, “mental illness” is a dirty word. We marginalize, we mock, we demean people with mental disorders. But the truth is, at some point in time, nearly every one of us suffers from mental illness. It is as ubiquitous as the air we breathe.

Mental disorders aren’t merely schizophrenia, bipolar disorder or severe depression. In my view and experience, they are a continuum of emotions ranging from stress and mild anxiety to debilitating manic depression. In 2011, the Substance Abuse and Mental Health Services Administration (SAMHSA) estimated our adult prevalence of any mental illness at 19.6 percent. SAMHSA defined any mental illness as “currently or at any time in the past year having had a diagnosable mental, behavioral, or emotional disorder (excluding developmental and substance use disorders) of sufficient duration to meet diagnostic criteria specified within the Diagnostic and Statistical Manual of Mental Disorder.” I believe, 19.6 percent is a severe underestimate of our public health burden of mental illness. These data likely fail to capture common stories of mental illness residing outside our ill-informed stereotypes, limited definitions and stigmatizing misperceptions about mental illness. For example, statistics don’t fully capture the root causes of scores and scores of homicides in our inner cities, nor the genesis of our epidemic proportions of tension headaches, back pain, fatigue and exhaustion from chronic diseases like hypertension, obesity and heart disease. These chronic diseases are nearly all derived from living in a society that demands much for survival, achievement and status. I also know the data do not capture my own fleeting bouts of anxiety as a deadline approaches when I am ill-prepared, or the sadness and despair I feel after listening to patient after patient relate their stories about the shame and secrecy enveloping their HIV or hepatitis diagnoses. Luckily, I know how to cope with these emotional vicissitudes — a call to a friend to discuss my frustrations, a bike ride, a quick run or a 10-minute meditation in which I sit alone quietly to breathe slowly and deeply, to pray, to focus on gratitude. But too often, rather than turning to similar personal interventions, we subconsciously dismiss the source of our emotional strain — be it fear, anxiety or pain — and mollify these discomforts with swift and temporary solutions like polypharmacy, food, alcohol, tobacco or other substances. These make us feel whole again for an instant. Then the effects wane and the cycle repeats. To me this is all mental illness hushed by our public health definitions and societal perceptions of what it means to be mentally ill.

Our demand for a public health response to mental illness waxes and wanes in parallel with our fickle engagement in these isolated conversations following tragic events. The recent tragedy at Sandy Hook has the medical and public health communities once again openly discussing the moral imperative and urgency for intervention and more comprehensive approach to gun violence and mental illness. We know the two are inextricably linked. This time I hope the conversation will be sustained because we can no longer afford to hide behind the shame and stigma of an epidemic so pervasive as mental illness. As I read the article about suicide among our servicemen and thought about how taboo the subject is, I realized we are a nation of” stigmatizers.” We stigmatize many things. Stigma is born from community perception and judgment, and it is of our own doing. We are swift to label and marginalize the groups that most urgently require our empathy, understanding and compassion. I see the effects of our judgments in my infectious disease practice, and I also see it with mental disorders. In our society, seeking support for mental illness is a sign of weakness rather than a necessary gesture for self care and preservation. Recently I suggested to one of my most beloved friends that he seek counseling as a mechanism to resolve a few difficult and emotionally painful issues. His response, somewhat in jest, was basically, “I am a man. I don’t do that.” His opinion is widely held, particularly among men, and sadly is likely deeply ingrained in our military personnel. Perpetuating the notion that to seek counseling signifies weakness is among our gravest societal mistakes. It is contributing to our public health crisis. As I learned during my studies with Dr. Jim Gordon at the Center for Mind Body Medicine, counseling assumes many forms and is a powerful and severely underutilized wellness intervention!

These days, we talk incessantly about living well and achieving life balance, yet we wear masks to hide our pain. No matter who you are, true wellness can never be achieved behind these and without facing our pain and stressors. The revelation of the loss of life from suicide among members of our military should assist us in maintaining a renewed urgency to devise a public health approach to mental disorders. Their decisions to end life rather than stay with us and engage are a poignant reminder about our urgent need to raise awareness, discuss these issues aloud and proactively change the national perception about mental disorders. To our honorable men and women who took their own lives, thank you for your service and may you rest in peace. For your sakes, I hope we can learn from the lesson you are teaching us and commit to do better and do whatever is necessary to be mentally well.

Recently, three sobering patient encounters highlighted the surprisingly low level of health literacy among the public – a health information gap that is likely due to poor communication between medical providers and patients. Each of the anecdotes, highlights a concerning communication gap between medical providers and the community. It is imperative that providers make the time to educate and clarify health information for our patients. This is the only way to be certain patients have the power and information they need to: 1. participate in the medical decision-making process and 2: ensure their own health and well-being.

The first patient I will call Ms. Jones. Ms. Jones is a 73 year old woman who has diabetes, high blood pressure and high cholesterol. She came to my clinic for follow-up for pneumonia but I happened to inquire about her blood pressure and cholesterol. She said she was still having trouble controlling her cholesterol so I asked her to tell me about her diet. She said, “I eat the same thing every morning. I have two scrambled eggs, with either two slices of bacon or link sausages and then I cook my grits with a little butter”. The horror must have shown on my face because after a moment of silence between us because she asked, “Why? Is that bad?” I took a breath and slowly began to explain how her daily breakfast was overloaded with cholesterol and fat, both of which were probably a big reason why she could not normalize her cholesterol. I asked if anyone had ever spoken to her about nutrition or if she had heard any of the information I just shared. She said she hadn’t.

The second patient is Bob. Bob is 32 year old and recently learned he’s HIV-positive. Bob wanted to know if his family members could contract HIV from sharing utensils or eating off the same plate as he. In addition, as we discussed the meaning of his laboratory results, I explained to him the meaning of the HIV viral load which tells me how active his virus. As I showed him the report, he noticed the range for viral load was 0-1,000,000 and said, “Oh wow. It can go all the way up to a million? That’s just a lost cause, huh? I bet you just can’t do anything for those people, can you?” First, I explained how HIV is transmitted. Then I explained that treatment for HIV is available for people with HIV and AIDS and that even people with a viral load in the millions can expect to respond to the medications just as well as someone with a pretty low load viral load.

The final scenario, which is by far the most humbling, is from a recent experience phone banking for a local TV station. I was asked to answer questions from the public about Swine flu. Questions from the community included: “How do I know if I have the flu?” “How do I keep from getting the flu?”, “How is swine flu transmitted?” and “Should I stop eating pork?” Over those few hours I felt the medical community had failed society. I took it for granted that the answers to each of these questions were well known to the public. As providers, one of our fundamental duties in service to patients is to educate them about common medical conditions but clearly our messages are not getting through to many. I am sure if I asked providers if they educate patients, the majority would say they do. What then can be explanations for this vast medical information gap? Are our explanations too technical? Are patients not listening? Do we give them too much information to digest? Are we taking for granted the public’s ability to absorb and retain basic health information? Of course there is always the possibility that we simply are not tailoringour messages and information in a language they understand. Whichever is the case, we are failing at health literacy.

The United States is the unhealthiest we have ever been and the costs of treating preventable illness is at an all time high. While individuals must exercise some personal responsibility for their health, it is our duty as healthcare providers to help ensure people are well-equipped with the information they need live in health and wellness. The doctor-patient dialogue is critical. If we are mindful and diligent, we can close this communication gap and help position our patients to be healthier, more empowered citizens.

A colleague just called me to advise him about treatment options for treating a patient he has diagnosed with a “superbug.” Superbugs are ordinary bacteria that no longer respond to our usual antibiotic armamentarium. They are drug-resistant. The conversation led to a discussion about the NIH superbug debacle this past summer. In August, there was public ire directed at NIH over “lack of transparency” about the deadly drug-resistant bacteria. As I told him, it is an ire that is misplaced and misguided. In an editorial response to the situation, a citizen wrote, “NIH had an ethical obligation to inform the public about this dangerous threat to the public health.” If this were the barometer by which people gauged their willingness for hospital admission, most would elect to convalesce at home. The NIH is no guiltier than hundreds of top-notch hospitals across the nation that don’t alert the community to similar struggles with containment of increasing prevalence of drug-resistant bacteria. The accusing finger should not be specifically leveraged against NIH but against community members and health-care providers across the U.S.

The death toll from the NIH superbug was six but in 2011, the CDC published dataattributing 98,987 deaths nationwide to these health-care-acquired infections. The truth is, for over a decade the CDC, health educators and a variety of other health mavens have been warning the public about the urgent need for behavior change in antibiotic prescription and usage, but this information has fallen on deaf ears. Antibiotic overuse by patients and overprescription by health-care providers are largely to blame for the emergence of drug-resistant bacteria. Therefore, lest the community continue to express outrage about the NIH’s lack of transparency, may I suggest an examination of the primary behaviors that have led to this urgent public health crisis.

First, health information about appropriate antibiotic usage is largely ignored by the community. Patients often feel entitled to antibiotics, and demand them regardless of whether or not they are medically warranted. During my residency in the mid-90s, while moonlighting in an urgent care center, I remember an interaction with a patient who arrived knowing exactly what she wanted. She told me she had come to get a prescription for amoxicillin because she could feel a cold coming on. She wanted to take the antibiotics pre-emptively to thwart the cold or, in her words, “knock it out” before it was full-blown. I told her antibiotics were for bacterial infections and because colds and flu are caused by viruses, the antibiotics were not warranted. She continued her argument, relating that all of her illnesses start in the same manner; she would later develop colored phlegm, signifying a bacterial infection; and the only thing that would help was taking an antibiotic at first symptoms. When I refused to relent, she told me about the other doctors who had prescribed the antibiotic in the past, and said that if I didn’t give her a prescription she would simply return and get the prescription from another doctor. I am sure she did.

Second, many health-care providers across the U.S. prescribe broad-spectrum antibiotics aimlessly and carelessly. Antibiotics have become a safety net as evidence of tangible health-care delivery. Patients want doctors to “do something.” In a society now accustomed to pharmaceutical remedies for every malady, when faced with an elusive or unknown diagnosis, an antibiotic prescription mollifies both the patient and the doctor. This cavalier approach is now pervasive in the health-care industry, and has helped create a culture of widespread availability and accessibility to antibiotics, which are the largest contributors to emergence of drug-resistant bacteria. When a patient first arrives with an unknown illness, understandably a provider may elect to cover as many bacteria as possible with an antibiotic, i.e., broad-spectrum. The problem arises when health-care providers are not diligent and thoughtful about the scientific and laboratory evidence supporting or refuting their decision to continue this broad coverage. It’s a perfect storm for bacteria crafty enough to reconfigure themselves to ignore and evade the threat of broad spectrum antibiotics. This behavior has perpetuated the continued emergence of multi-drug-resistant bacteria like the superbug at NIH and many hospitals across the U.S. I was once consulted by another doctor to see a patient who appeared to have an infection. Upon review of the information, I discerned the patient did not have an infection and recommended antibiotic discontinuation. The doctor thanked me for my consult and discharged the patient on antibiotics “just in case” the patient had an undetectable infection.

The emergence of multi-drug-resistant bacteria is a challenge that will be with us for years to come. The solution demands a strategic, thoughtful and collaborative team approach. Scientists can contribute to the team by developing new antibiotic agents to treat drug-resistant organisms or “superbugs,” and I am confident they will. However, once these agents are available, what will prevent us from witnessing emergence of resistant “superbugs” to new, more powerful antibiotics if we don’t initiate behavior change in antibiotic overuse and prescribing patterns? Behavior change is never a popular remedy to a health crisis, but in this case it’s vital. Health-care providers and the community members have a critical role to play in in addressing this public health crisis. Each can consider adopting one of more of the following actions:

Review the CDC health information on appropriate antibiotic use. The vast majority of upper respiratory infections result from viruses like influenza. Viruses do not respond to antibiotics and are therefore not necessary. Community members can refrain from demanding antibiotics. Keep an open mind when engaging your health-care provider about an unknown illness or infection. Antibiotics may not be the solution, and you may leave the office with only health advice rather than a prescription. Maintain close — and truthful — communication with your health-care provider about changes in your symptoms. Health-care providers can trust clinical judgment to discern appropriateness of antibiotics and devise practical ways to educate patients about responsible antibiotic use.

Limit personal antibiotic usage. Unfinished antibiotics often remain in the home. Never use an old antibiotic to treat a new infection or borrow leftover antibiotics from friends and relatives. Always consult your health-care provider to determine the need for a new prescription.

Learn about where to dispose of unused antibiotics by going to the DEA website. This prevents unwanted antibiotics from contaminating the general water and food supply.

Wash your hands. Handwashing remains the single best and most effective public health intervention for interrupting the spread of bacteria and viruses. Wash hands regularly with soap and warm water.

Finally, reduced community demands and provider prescription will be impactful, but the solution will likely also require quality control programs, restriction and evaluation of antibiotics prescription by infectious diseases experts, particularly in hospital settings. This strategy will undoubtedly be unpopular and controversial, and may invite resistance from health-care providers who shun the oversight. However, the status quo is unacceptable and demands action. Anything less will mean waiting for the next sensational story about the wrath of a new superbug. Only then the death toll will likely be much, much higher.

I was sitting in a café writing an editorial about HIV testing as I waited for my breakfast. I noticed a young man sitting behind me but didn’t give him a thought. My number was called so I got up to retrieve my food. When I returned to the table the young man asked if I was a doctor. I asked how he knew and he realized he had been caught reading the document on my computer. I was glad he did. His curiosity led to an epiphany that exacerbated my professional restlessness about addressing the HIV epidemic. We are still failing to educate the community about HIV. This 29 year old with two years of college from an esteemed university engaged me in a conversation that helped me realize despite our marketing and educational efforts thus far, our messages are not getting through to the people who need them most. Right there in the café, he spoke so openly about his HIV knowledge I could not let the opportunity pass to probe his notions about the disease. I sat and listened for nearly 30 minutes in complete awe… and sadness. He talked without almost no prompting as if he had been waiting for someone to come along and listen to everything he knew about HIV. Occasionally I would jot a few words on my computer to capture his thoughts and remind me of the lessons he was bestowing upon me. He told me:

He used to visit friends in a group house and would sometimes be invited to sleep over on the sofa. He later learned that one of the residents was HIV-positive. From that day forward, he would stay in the house but was “nervous” about sleeping on the couch when she was in the house and couldn’t sleep through the night. He knew he couldn’t get HIV from the couch but the presence of an HIV-positive person in the home made him uncomfortable. One of his friends told him if you use same shower as someone who is HIV-positive you should wash the tub with bleach before taking a shower. He has concerns about contracting HIV from a toilet seat because if an HIV-positive person has used it before him, the germs might still be in the toilet and if the water splashes up and contacts his skin and he could get infected. He has a friend who thought he may have been exposed to HIV so he drank a cup of bleach.

He believes people with HIV should be segregated from the rest of society and “should have their own groups” but mostly for their own good because it would make them feel more comfortable. He added this is also a good thing for them since they probably don’t have anything else to live for. He made a distinction between HIV and AIDS and said there was no treatment for “people with full blown AIDS. That would be a miracle”. He added if treatment was available for AIDS then people would take it and just keep on doing what they are doing. (It was the first truth in all of his ranting). He continued, in a hospital setting, “HIV-positive people should all be segregated on their own hospital ward.” He talked about how you can always tell who has AIDS because they have lost a lot of weight and their “brain is not functioning right”. He wanted to know if you could catch it from sharing a “smoke.” I asked if he would eat off my fork if I was positive. He said no and launched into a diatribe about how certain African communities eat from a communal dish with their hands and how this is probably contributing to the spread of HIV. I asked if he would allow an HIV-positive relative to live in his house. He said no.

He told me about stories he had read on the internet. There is a man in Kenya who has the cure for HIV but no one knows about him except rich people. Magic Johnson learned about this man and flew to Kenya, paid the man $1 million and now has been cured of HIV. He also thinks the government is about to eradicate antibiotic availability the impact of which he said is people with gonorrhea will no longer be able to be treated.

I asked if he felt his friends and family shared these beliefs. He answered emphatically, “Absolutely.” My heart sank repeatedly throughout the conversation but it was a teachable moment and I realized the challenge was also a tremendous opportunity. The epidemic is over 30 years old. The science has progressed but for some our thinking, perceptions and awareness have not. We must be more aggressive about ensuring community awareness about basic HIV information. I seized the moment to continue my discussion with the young man in the café that day and highlighted important information everyone must know about HIV in 2012:

AIDS is no longer a death sentence. No one has to die of AIDS anymore. The treatment for HIV infection prevents AIDS and leads most people with AIDS to a full recovery. Sometimes it takes a bit longer for the immune system to recover in people with AIDS but the treatment works well, even in people with “full blown” AIDS. Many patients who learned they were positive many years ago but never sought treatment have come into my office on death’s door because they were afraid to hear they had AIDS or because they didn’t realize that AIDS can now be treated. Last month one of my patients who was diagnosed with AIDS in 2009 came for a follow up visit. Her HIV is so well controlled on medication we talked about her HIV for less than five minutes. We spent the remainder of the visit trying to devise a practical strategy for her to lose the 76 pounds she regained when she started to feel better. Because the treatment is excellent with few side effects for most people, it no longer matters if someone with HIV infection has AIDS. And certainly no one has to die from it.

HIV is not spread by casual contact. HIV is completely preventable. A person can not become infected with HIV by hugging, touching, kissing, sharing a cigarette, sitting on the same furniture, using the same bathroom or eating and drinking from the same utensils. A person gets infected with HIV by sharing blood, semen, vaginal and anal fluid. Anal and vaginal sex are the most common ways to contract or transmit HIV. In fact, having anal sex without a condom is the highest risk sex act for contracting HIV. This is important because many heterosexual people engage in anal sex but may not realize the risk associated with HIV transmission. I recently delivered a seminar for a group of teenagers who were shocked to learn anal sex is a risk factor. The information was a wakeup call for them since some routinely engaged in anal sex to prevent pregnancy or to preserve virginity. The risk of contracting HIV through oral sex is very small and unlikely unless the giver or receiver suffers from bloody gum disease. The risk of HIV transmission also increases in people with sexually transmitted infections like herpes, syphilis, untreated gonorrhea and Chlamydia.

HIV does not have “a look.” In 2009 at a World AIDS day program, I invited several HIV-positive persons to serve as panelists for a community audience. The audience was unaware of each panel member’s HIV status but I asked them to guess which person was HIV-positive. A few people made selections based on appearances but overall the audience was surprised to learn the truth. The panelists included heterosexual men and women with ages ranging from 20-60. You cannot look at a person and suspect his or her HIV status, especially people who take their HIV medication faithfully. Magic Johnson, despite his wealth, is a wonderful example of what how medication for HIV is effective and allows people to live a long healthy life. His recent appearance in a PBS documentary illustrates his healthy appearance and his continued need for medication. Many of my patients are low to middle income but those who faithfully take their HIV medication look just as healthy as Magic Johnson.

HIV transmission is preventable. Many people know HIV infection can be prevented by using condoms consistently, abstaining from sexual activity or maintaining one HIV-negative sexual partner. Each of these is critical to eliminating the spread of HIV. However, preventing HIV begins with knowing whether or not you have HIV. The Centers for Disease Control and Prevention estimates that 1 in 5 people do not know his or her HIV status. Because HIV is now a treatable condition like diabetes or high cholesterol, getting tested for HIV is life-saving. Furthermore, many people are not aware that treatment for HIV prevents the spread of HIV. This is because HIV transmission will be drastically reduced if an HIV-positive person takes medication everyday. Because the medication stops HIV from reproducing in the body, if the amount of HIV in the bloodstream and tissues is low or “undetectable,” an HIV-positive person is much less likely to spread the virus to another person. For many years we have known HIV medications can reduce transmission because medication given to an HIV-positive mother was shown to prevent transmission to her baby. Similarly, a more recent research study among heterosexual people revealed HIV-infected people whose virus was controlled by medication were 96% less likely to transmit HIV to their HIV-negative partners. These are tremendous advancements in the treatment and prevention of HIV. But we will only see the benefit of these advancements if everyone gets tested, infection is identified and treated by a medical provider.

My epiphany in the café was that despite our marketing and often cursory and isolated educational efforts to publicize HIV-related information, we are ineffective. As I wrapped up my conversation with the young man, he was appreciative and eager to know more. We discussed the need for continued and specific HIV education throughout the community. We also talked briefly about solutions which we agreed largely will require combined efforts across the country such as community members and people with high visibility- he suggested influential hip-hop artists- engaging in sustained conversations about HIV or healthcare providers beginning to offer HIV testing just as routinely as they offer a blood sugar test to look for diabetes. These efforts will help reduce the shame and embarrassment associated with being HIV-positive, a byproduct of which is open and free discussion which invites solutions rather than misinformation and judgment. If we really want to address the epidemic, we need to analyze reasons our messages are not getting through to the people who need them most. Then we must make the commitment to boldly move forward to broach uncomfortable discussions — no matter how difficult, sensitive and offensive our messages may be because these conversations will ultimately save lives.

Information on this site and through PPH, Inc is designed for educational purposes only.PPH, Inc is not engaged in rendering medical advice or professional services. The information provided through this publication should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care.